Announcement

Collapse
No announcement yet.

cysto / hydro Friday - need encouragement

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Margaret-Sonoma
    replied
    Hi everyone out there in IC-land!!

    Sorry I don't have any experience with Hydrodistension therapies, but what I may now say may actually help some of you right now. I have only been diagnosed with "possible" IC for 2 months, and am currently taking amitriptyline 10-20mg for enough relief to sleep. I have spent several days on the internet now, and yesterday, finally, I feel like I am coming to understand my particular problem, so bear with me as I tell you just how I came to my breakthrough conclusion, and self!!-diagnosis. I guess you could say this is completely off-topic, relative to one's upcoming hydro-distention appointment, but then maybe my information is absolutely a perfect fit.

    I won't go into all the details, but I felt I had a bladder infection, and the docs said no. Then they started to treat the symptoms of an irritated bladder, you know the routine, all of a sudden your diet is called into question, you start blaming yourself that you had that one cup of delicious coffee every day, and maybe you yourself set your body up for this terrific fall from grace. I went through the dread, doom and gloom phase, thinking , "what could be wrong?" and finally went to a Kaiser urologist with a laundry list of symptoms. After an office cystoscope, he declared possible IC in the early stages. Now I had to run around telling friends and family I had this new disease wherein my bladder lining was either leaking or disintegrating. I stumbled over saying the word "disease." It just didn't feel like I suddenly had acquired a disease. I read early on a Moldwin interview wherein he said that many IC women had scoliosis, or a history of bicycle riding for long periods of time. Bingo!!! That was me. I lived on a bike for 41 years, living in Davis, California off and on for 23 years without a car. But as I researched further, and even mentioned these possible links to my doctors, I did not get their attention. I joined an NIH study in Stanford for amitriptyline, so this drug could get recognized as first line treatment for IC patients, received the placebo, and bowed out of the study, got the drug from Kaiser, and Voila! the nocturnia went away, as well as many of my day time symptoms. But I could still feel that the bladder pain was just being masked by the drug, not particularly healed. I read about Jill's story of going to the SF Doc who treated her with electrical stimulation in the ankle, the end-point of the third sacral nerve, that also innervates the bladder and pelvis. She declares that along with Vistaril, an antihistamine, the S3 stimulator she could use at home really did heal her bladder. Of course I wanted to go right to that doc in SF, but haven't yet.

    In the meantime I have been taking Aloe Vera juice, Gotu Kola tablets, Glucosamine with MSN, and Quercetin, all in an attempt to heal the lining of my bladder. I have been reading various posts here on this wonderful website, hoping to find my own cure. Yesterday I think I finally read about the real cause of my particular problem.

    Kara-29 added a new diagnosis to her situation. She mentioned PNE, pudendal nerve entrapment, and as I had been thinking lately that my problem is one of nerve damage, I immediately went to that website: International Pudendal neuropathy association.org will get you to their website. The urologist originally asked me how I get relief, and of course I said my symptoms go away while sitting on a toilet seat. And in the course of these two months I noticed strange products on this website, those little donut cushions with the hole cut out for sitting. And someone mentioned sitting with spread legs, or knees pullled up to relieve the pain we get. If the root of the problem is our bladders, why does varying one's position relieve some of the pain?? If my bladder is the root of the problem, why do I have a difficult time sitting in front of this computer, getting numb and very uncomfortable? Pudendal nerve entrapment seems to be the real diagnosis for me. This nerve can become flattened with repeated pressure from a bicycle seat, and can form some kind of fibrosis around it as protection. With a thickened or flattened nerve, it no longer comfortable squeezes through two sacral ligaments, hence the nerve is not properly innervating the bladder, the pelvis, the vulva, and the urethra. Here we are trying to heal the lining of our bladders, but the poor nerve is still being squeezed. For me, the lining of my bladder is not the root of this problem. One look at the complicated tangle of muscles, ligaments, and nerves of the pelvis tells you why our 15 minute doctors at Kaiser aren't getting down to the real root of our problem, or maybe just my problem. I encourage everyone who thinks they have bladder problems, and also has trouble sitting comfortably to head to that Pudendal Neuropathy website. I will soon see a Neurologist at Kaiser, and will come back to post my diagnosis. My suspicion is that many IC sufferers have nerve damage of one kind or another. The bladder lining is not functioning properly because of improper innervation. Let's stop putting the bandaid on the lining of the bladder and get down to the real basic nerve issues. I hope this helps at least one person out there. And thanks again to Kara29 for giving me an awareness of her very important diagnosis. The ability to come here and read all of your stories has lead me to my path of healing, even if it requires a trip to France for surgery with the pudendal nerve entrapment specialist, Professor Robert, in Nantes France. The power of the web is amazing, and I so appreciate all the time you all have spent sharing your medical histories, therapies, and coping strategies. Heart-felt thanks to Jill and the contributors.

    Margaret in Sonoma

    Leave a comment:


  • ICNDonna
    replied
    As a "veteran" of many hydrodistentions, I will state that I would never want to have one without anesthesia. I also had a colonoscopy with just versed, but there is absolutely no similarity between the two procedures. In a colonoscopy, an instrument is inserted into the rectum and fed into the colon to view it; sometimes polyps will be removed (mine were). There was absolutely no pain afterwards.

    When I have a hydrodistention, there is definitely some pain immediately afterwards for a few hours, which tells me that the procedure would not be fun without anesthesia.

    I hope you will find that you have some relief from your symptoms from the procedure, as well as a diagnosis.

    Donna

    Leave a comment:


  • BadKitty
    replied
    It is kinda strange that they use general anesthesia for that kind of procedure. They don't even put you under for a colonoscopy - just sedate you a little. When I had the colonoscopy I asked if they could just give me demerol or something instead of using the sedation and my gastroenterologist said that was ok. I felt a little jabbing here and there but nothing horrible. Is it possible you can request to be just sedated or possibly given something to ease the pain for cysto/hydro?

    Regarding in-office cystoscopy, I had my first one last monday and it wasn't that bad. My urologist doesn't really recommend cysto/hydro for many reasons - one being the unnecessary general anesthesia and she also said that they can't really see anything more then they can with in office cysto. I know her and all the urologists in this practice are highly reputable and are the best where I live. However, from seeing how many people have had cysto/hydro done it seems many other urologists recommend it for accurate IC diagnosis so it's hard to say. It seems my doctor didn't "definitely" say IC was causing some of my problems, but said I could try the pain meds for that to see if it helps. Luckily, since I had the cysto, I have felt much better for some reason (knock on wood) and havent had to use any meds. I have a bottle of Urelle tablets that I haven't used as of yet. I guess my recommendation would be that if your urologist recommended cysto/hydro for more accurate diagnosis I would probably just go through with it, but maybe you could ask if they could use another form of sedation or pain killer?

    Leave a comment:


  • charmedx3
    replied
    I just had mine on monday. I was so nervous that I told them as I was heading in to the OR that I was heading for the door!!!
    They were not able to start the IV first in me but if they had then I would of had medication to relax me. So they put me out in the OR. I feel very crampy & sore like I have done a ton of sit ups but I could work today if needed.
    I am glad I had mine done. They took biopsies & burn stuff off my bladder. I will find out more at my post op appt.
    Hang in there! You will do fine!
    After the hydro they were great! I asked for a warm blanket to put on my lower abdomen to help with the pain and ice for my burning. They gave me fentenayl(?) and dilaldid ( again sorry ?) for the pain. it was the drive home the was awful---for my tummy!

    Leave a comment:


  • jen74
    replied
    Everyone is different in how they are affected when going through invasive procedures. If you are having any doubts, maybe you should talk to your doctor and tell him/her your concerns and ask him/her all the questions you may have,( i.e. all the pro's and cons's of this test etc..).
    I wish you the best of luck in whatever you decide to do.
    Jen

    Leave a comment:


  • mary124
    replied
    I have had about 10 of them and I am usually alright after about 2-3 days. i work full time and I schedule them on Thursdays this way I have off this day along with Friday and the weekend off. I am at work again on Monday. They usually give you pain medication - Imight need it for maybe 2 days then I don't need it any more. They are more of a success for me, I only had one that I had problems with and that was one that I had in October where I was bleeding for over 2 weeks, found out I had bloodclots/plus an infection. Finally bleeding stopped. Once everything cleared up, I was fine. They (the hydros usually help me for 6-8 months then I have to call my doctors and schedule another one.

    Leave a comment:


  • kttex
    replied
    So helpful

    Everyone on this site has been extremely helpful and supportive. I'm feeling a little better about it, but I'm certain I'll be nervous no matter what.

    I've heard the procedure takes only 15 or 20 minutes. So I won't be asleep for very long. Has anyone been afraid of the general anaesthesia? I've never had general anaesthesia for anything. (I have that fear, too, about not waking up.) Has anyone just had regional anaesthesia - like an epidural I would imagine?

    Thanks for all the support!

    Leave a comment:


  • GriffsMommy
    replied
    I agree with Jen. I was super nervous about my hydro. I had also read all of the things here and how some people where made worse. I specifically asked my uro if any of his patients had been paid worse by it, he said now and I believed him. I'm happy I did it because w/o the biopsy I wouldn't have gotten the diagnois. I was uncomfortable afterwards but it was nothing that the pain meds didn't help and I didn't get worse in the long run or better. After I recovered from my hydro I had the same symptoms I did before hand. Didn't help, didn't hurt but got my diagnois. Good luck!

    Leave a comment:


  • Sarojini
    replied
    I was diagnosed with just the cysto/hydro under anesthesia -- I've never had an in-office cystoscopy. You are right; sometimes IC "hides" from the in-office cysto and only becomes visible upon distention of the bladder.

    So, since office cystos can be painful and probably won't tell you much, my opinion is that you should just have the full monty now since you are scheduled... they will see everything they would see on an office cysto and more with the distention, so why put yourself through extra pain at this point?

    BUT, that is just how I, personally, would be thinking -- you may feel differently.

    And, I was super nervous before my cysto/hydro too (crushing my husband's hand, wailing that he should remember that I loved him if I didn't wake up, and generally scaring other patients in pre-op ). They were very good and did give me something to relax me, which worked extremely well.

    Leave a comment:


  • RMahoney
    replied
    Just wanted to let you know that I just had my first hydro/cysto on the 19th of June. I am doing great. My urgency is not as bad as before and the pain is not as bad as I thought it was going to be. I was diagnosed with IC which we were already pretty sure about but it is nice to know for sure. I spent a couple days on the couch but have been back in the saddle since then. Good luck and Gold Bless You, I hope you have results like mine.

    Rhonda

    Leave a comment:


  • kttex
    replied
    one more question

    Would it be better to do an in office cysto first before going through the one with hydro? I've read though that doctors can't always get an accurate result from doing just this.

    Leave a comment:


  • kttex
    replied
    cysto / hydro

    Yes, they'll be putting me to sleep. I'm the nervous type, so maybe I should ask them to give me something to "relax" me beforehand.

    What kind of pain meds have been helpful to people after the procedure?

    Thank you. Thank you very much.

    Leave a comment:


  • ICNDonna
    replied
    It's been almost two weeks since my last hydro. I still have very slight irritation, but it's better every day --- and definitely better than before the procedure.

    Hang in there. I have read that something like 50% of ICers see improvement from hydrodistention --- I hope you'll be one of them.

    Sending encouraging hugs,
    Donna

    Leave a comment:


  • kjd
    replied
    Oh hon, you will be fine I promise. I wont lie to you I will never have one done again as it made me alot worse, but unless you try it you will never know!

    Some ladies get a lot of relief from hydro's and they can help the doctor find alot out about your bladder!! some ladies have them time and time again!

    Lets just hope you get a positive response from it though,

    Are they putting you to sleep?
    x

    Leave a comment:


  • Sarojini
    replied
    I had my one and only cysto/hydro three years ago now. I didn't have much of a problem at all The surgery itself was a breeze, and I was given excellent pain control in the recovery room. I was also given a prescription for pain medicine to take at home.

    The first few urinations were bloody and a bit painful -- there was some soreness and burning. But, with each subsequent urination, the pain lessened. I also felt crampy and achy in the bladder for the first 24 hours. I was pretty tired for a day or two as well, but within 48 hours I was able to be up and around, doing my normal thing

    Not a problem for me..... and I have severe IC, so it just goes to show that everyone is different when it comes to recovery.

    Leave a comment:

Working...
X